10.08.2014

This year’s Jingle Bell Run/Walk honorees have a lot more in common than arthritis: they’re mother and daughter! Meet adult honoree Christie Biesold and her daughter, youth honoree Courtenay Brennan.

Christie was diagnosed with psoriatic arthritis eight years ago after six months of pain, swelling and stiffness in her hands and feet. She had blood work done and went to several doctors, including orthopedists and podiatrists. Her blood work didn't test positive for rheumatoid arthritis and no one could figure out what was going on. The light finally came on after talking to someone with psoriatic arthritis.

“When I told him about my symptoms, he told me his had been the same before he was diagnosed,” says Christie. “I went to see a rheumatologist who asked if I had ever had psoriasis. I’d forgotten that I did have psoriasis on my scalp when I was in college, but I'd been using medicated shampoo ever since and it seemed to go away. My scalp had itched more during that six-month period, but it just didn't occur to me that it was the psoriasis. That link was exactly what we needed.”

Christie began treatments, and after trying several medications, she finally found one that managed her arthritis well enough that she could slowly work back into playing tennis. Things were going well for Christie until 2012, when one of her biggest nightmares came true.

Worst fears realized

Courtenay, then 14, ended up in the emergency room with pain and inflamed lymph nodes. She fit all of the symptoms of appendicitis and the doctors told her they’d have to do surgery to remove her appendix. But when they did an ultrasound to confirm it was the appendix, they didn't see any problems. Later that summer, Courtenay broke her arm. She started noticing that she was tiring really easily and her jaw, which had been giving her problems for two years, was becoming more painful.

Blood work couldn't confirm anything, but an MRI on her jaw did. Courtenay was diagnosed with juvenile psoriatic arthritis.

“It’s so hard because I know exactly what she’s going through,” says Christie. “I got 37 ½ years and she got 14 ½. It just feels like a raw deal and it’s so not fair that kids should have to go through any of this. I had my high school years carefree and running around with no pain and… I just don’t get it.”

Christie and the doctors agreed on treating it aggressively. She got their pediatrician to help her push Courtenay into rheumatology at Children’s Hospital. She had to fight with her insurance company when they didn’t want to cover the aggressive treatments.

“The doctors tried to fight them and it didn’t work, so I took them on,” says Christie. “It took about four weeks. I sent them phone calls and emails daily, buried them in paperwork, I sent them x-rays, MRIs, journal articles about the success of aggressive treatment. And then we finally got them to change their minds and they put her on Humira. We then began the long road of trying different biologics.”

Balancing school and arthritis
Not only was Courtenay trying to adjust to her new diagnosis and medical treatments, she was also adjusting to high school. That’s intimidating for any kid, let alone one with a special set of circumstances.

“I had just switched schools and was completely new,” says Courtenay. “When I’d tell kids at school that I have arthritis, I’d either get one of two reactions – ‘What are you, 80?’ or ‘What’s that?’ Some people say all I talk about is my arthritis. It comes up in conversation a lot because I deal with it on a daily basis and it makes it so I can’t do a lot of things. I don’t want it to define me, so I try not to talk about it all the time, but because it’s such a large part of my life, it does come up a lot.”

Courtenay ends up having to miss a lot of school because there are days – or even weeks – where the pain, stiffness and fatigue of her arthritis are so bad she can’t get out of bed. The state’s 504 Plan allows ensures that kids with disabilities defined under the law receive certain accommodations to help them succeed, such as not penalizing them for missed days, allowing them to complete school lessons at home and letting them turn work in late.

“Not everyone realizes that even though I was at school, I may have used up all of my energy and can’t do school work once I get home,” says Courtenay. “I’m fortunate to have a teacher that understands what I’m going through and he is able to help other teachers understand. When I’m at school, I try to act positive. They seem me pretending to have all this energy but they don’t see me when I’m not doing well, so they may think it’s actually not that bad.

“People I’m close with understand it a lot better. They’ve been through a lot of it with me – they know I have to give myself three shots a week, they know how much school I miss, they see me struggling walking up stairs and know it may take me longer to get somewhere, so they wait for me.”

Finding a silver lining

As devastating as it was for Christie and Courtenay to learn they share the same diagnosis, it does have its advantages. They’re able to understand what the other is going through. When Courtenay isn’t feeling well, she doesn’t have to explain it to her mom in as much detail as she does her dad. It also gives Christie the ability to be a better advocate for Courtenay when it comes to working with her school and her doctors.

“We had to switch doctors about 9 months into her diagnosis because we weren’t getting the care she needed,” says Christie. “They thought it was in her head, so I took her to my rheumatologist and she treated her very similar to the way she treated me – and she actually got better! On the flipside, it’s heartbreaking because I spent years trying to get well and I never thought in a million years that my daughter would get it and not as a teenager.”

Genetic factors play a role in psoriatic arthritis. Children who have at least one parent with either psoriasis or psoriatic arthritis are more likely to develop psoriatic arthritis. Although Courtenay has psoriatic arthritis, her younger brother, Connor, does not.

Getting involved
Christie walked the Jingle Bell two years after she was diagnosed and got Courtenay, son Connor and stepson Colby to walk with her. She reached out to friends and family and raised a couple of thousand dollars and had a lot of fun. She didn’t participate again until Courtenay was diagnosed. She decided to get more involved in Jingle Bell and the Arthritis Foundation now that there were two of them.

In addition to being this year’s honorees, they both serve on the Jingle Bell’s marketing committee. Courtenay has also attended the foundation’s KAT-FISH Camp for kids with arthritis and their families, for the last two years – most recently as a junior counselor.

“It’s really nice because you get treated completely normal,” says Courtenay. “Everyone else has the same capabilities you do. And it’s great to see where some of the Jingle Bell fundraising money goes!”

Why should you Jingle? Because it’s fun!

“Everyone dresses up and there are awards for best costume,” says Courtenay. “It’s so entertaining to be there and see everyone’s costumes! Last year, I saw a family dressed as a snow king and snow queen and princesses. The amount of work people put into their costumes is amazing. The whole run has a good vibe and it’s festive and gets you in the holiday mood!

“It’s a great event during a fun, festive time of year,” adds Christie. “It’s a good way to feel like you can participate in the community and give back to the community and in December people are always looking for ways to do that.”

But more importantly, the money raised goes toward Arthritis Foundation programs and helps fund research efforts to find a cure.

“Arthritis is a silent disease,” says Christie. “If you don’t have it, chances are you have a friend or relative that has it. They are so close to unlocking this disease. I think Courtenay is going to see a cure in her lifetime. The strides and success they’ve made in the last 20 years with the biologics are enormous and they’re just scratching the surface.”

11.25.2013

When I first found out I had end stage osteoarthritis in
both hips, I was told I had two options: live with the pain, or have total hip
replacement (THR) surgery. But if I had THR surgery, because of my young age, I would
eventually need a revision.

I spent countless hours doing research, and discovered I had
another option; something called hip resurfacing. Instead of cutting off the
top of your femur and installing metal, ceramic, or plastic parts, doctors
reshape the femoral head and cap it with a metal prosthesis. The socket is also
reshaped, and fitted with a metal cup, which your bone grows into. For younger
patients, it allows them to continue to be active; to run, to jump and to play
with your kids. This was very important to me.

But after jumping down the rabbit hole that is researching
medical devices, I discovered that sorting fact from fiction can be a
troublesome task. How as a patient are you supposed to wade through it all? One
doctor says, “Use only this kind of device.” Another says, “that device could
hazardous to your health.” It’s very frustrating.

This is not a unique situation. I am sure there are many of you who've faced similar conundrums. This is why the work that the Arthritis Foundation does is so important. They are a tremendous resource of practical,
unbiased information for people who have just been diagnosed with arthritis and
those who’ve been living with it for years.

11.13.2013

My name is Michelle and I am one of your honoree’s for this year’s Jingle Bell Walk and Run that is taking place at Westlake Center on December 8th. I have been living with a lesser known type of Arthritis called, Mixed Connective Tissue Disease for the last 10 years.

I’ve often wondered how researchers study a disease like arthritis, but honestly, I’m often so consumed with managing my own care that thinking about it is as far as I have gotten. That was until last week. I had the opportunity to meet Kay and Denna from Plasma Lab International at our Jingle Bell Run and Walk Kick-Off Breakfast and they invited me up to tour the facility and learn more about what they do there.
Plasma Lab specializes in collecting plasma from clients that have allergies and very specific auto immune diseases, like Rheumatoid Arthritis, Lupus and Scleroderma.

The plasma goes to many different countries for research that will hopefully one day soon find that breakthrough that so many of us are desperately hoping for.
I’ve always had the misconception that people who donate plasma are down on their luck and in the need of a couple bucks. Plasma Lab changed my mistaken belief. The facilities are very nice and the staff is kind and compassionate. First, they screen your blood to make sure you have the very specific antibodies they need. If so, they schedule you for an appointment and the entire process takes no more than one hour and fifteen minutes. Your red blood cells are put back into your body so the process isn’t as hard on the body as giving blood. You get to crash out on a couch and have snacks afterward. I was so impressed that I had the lab take a sample to see if I could donate plasma too.

For me, it’s a good feeling to know that I could have another way besides fundraising and advocating that could aid in finding a cure.

9.27.2013

When I tell people I have artificial hips, the most frequent
reply I hear is, “But you’re too young for that!”

I only wish that were true.

The fact of the matter is; I’ve lived with osteoarthritis
and the conditions that precipitated it for most of my life. As early as third
grade, I remember having pain in my hips. When I got into high school and
became very active in football, track, and weight training, the pain only
increased. By the time I was a junior, the stabbing sensation I felt in the hip
joints had gotten so bad, I went to see a specialist.

Four doctors, three x-rays sessions, two MRI’s and a bone
scan later, I still didn’t have any
solid answers. The best guess of the last orthopedic doctor I saw, was that I
had slight hip dysplasia that was causing swelling and pain. “Take some Advil,”
he told me.

So for the next 20 years, pain became a part of my daily
life. If I was really active one day, I’d be really sore the next. Year by
year, my hips became less and less mobile. Still, at age 35, I decided to take
up jogging as a way to keep fit. It would hurt afterward, but I loved the
runners high from pushing myself. I started training for half marathons and
completed three of them.

In time, the pain became different. I was experiencing
constant dull aching; the kind of pain that would keep me up half the night. I
decided it was time to go back to the doctor.

It only took one x-ray to get a diagnosis this time. The
doctor told it to me bluntly. “You have end stage osteoarthritis.”

In that moment, I knew my life would never be the same
again.

It’s why the work of the Arthritis
Foundation is so important to me. I’m incredibly honored to serve as Grand
Marshal of the 2013 Jingle Bell Run/Walk and hope you’ll consider forming your
own team or joining mine.

9.25.2013

Hi! My name is Michelle and I am very proud and honored to be the adult honoree for this year’s Jingle Bell Run and Walk. I wanted to take some time to tell you my story with auto immune diseases.

I had always been extremely active. I loved running, snowboarding, hiking—any excuse to be outside, really. Very slowly I began to notice that my hands and feet would go numb and turned white when I was stressed or especially when I was cold. I just ignored it because I had never been sick before. Both my mom and grandmother have auto-immune diseases, but it never occurred to me that I would get one too. Then I noticed that I was not recovering from workouts; I was so sore and tired. I thought maybe I was working out too hard. After a month of being so tired I could barely get out of bed I thought it was time to see a doctor. She did blood tests and they could find nothing. I went home and tried to ignore it. After a while longer, I noticed that my joints were swelling and my muscles were very tender and I went back to the doctor again. This time she sent me to a Rheumatologist. After some tests, it was discovered that I had Mixed Connective Tissue Disorder. (MCTD) This is commonly referred to as an overlap disease because symptoms from other diseases such as Lupus, Scleroderma and Polymyositis.

I started down the path of trying to find the right combination of medications that would make me feel ‘normal’—the new ‘normal’ I should say. And my symptoms got a lot worse before they got better. I was so sick from the medications that I couldn’t keep food down. At one point I needed help doing the things we all take for granted. Things like tying my own shoes and zipping my coat. This was an extremely humbling experience. I was once fiercely independent and now I needed help doing stuff like that? It was really hard for me to accept, my new life. Because of the changes my body was (Is) going through I became pretty depressed. I couldn’t garden, go out with my friends, and work on my house. It was difficult for me to say the least.

A few years after I received my MCTD diagnosis, I started having problems breathing. That is when I found out that 80% of those of us with MCTD develop lung issues. The lung walls thicken making Pulmonary Hypertension a huge concern. I was so scared. I just didn’t understand how this could all happen to a healthy person. I felt as though my life now was being spent in a doctor’s office or having lab tests. I am lucky to have insurance because the cost would be astronomical.

Last year I was tired. I was tired of not being able to do the things that I wanted to do. I understood that I would most likely ever be the same, but I still wanted to go do things—watch the Seahawks, cheer my husband on at his events and go on a vacation without being exhausted. I needed to make some major changes—the first one was just getting off my butt and start being active again. I found a couple of workout partners and got back in the gym, very slowly at first. Just a slow walk was good enough! Now I am in the gym 4-5 days a week and just this week I started a conditioning class to start working on my balance and keeping my muscles from deteriorating any more. From research I knew that gluten could pose issues for me too. In the past I had allergy testing and knew that I had sensitivity to wheat. I didn’t want to accept it at the time, but I know my body well enough that if I am sensitive to it, whatever it needs to go. I thought that getting rid of wheat products would be pretty hard, but with the decrease of joint swelling that has occurred, I am sold. I even had to take my wedding ring down an entire size. I found a massage person that understands auto immune and now have a massage once a month. And I finally have cocktail of medications that are working and don’t make me sick or broken out in hives all the time.

It’s been a struggle, but for the first time in over 11 years I feel ‘normal’. My new ‘normal’. And it feels pretty darn good.

7.31.2013

As a parent of a child with Juvenile Arthritis (JA),
I know all to well that it is not a small problem. The joint pain, lethargy,
change in attitude, and all the negative side effects that come with the
disease are very often overlooked and misrepresented or unnoticed by parents
and the media. When my daughter Maggie was diagnosed at 18 months old, I was
shocked to learn the number of children affected by this disease nationwide.
Why had I never heard about this issue if so many are affected by it?

Luckily the Arthritis Foundation has been working for
years to foster community for those suffering from this ailment. They
continuously contribute to a growing awareness of JA through programs and
resources, as well as educate about all of its forms and symptoms, how it can
affect a family, and ways to improve quality of life for those affected.

If you don’t already know, please inform yourself
by going to the Arthritis Foundation brand new site focused on JA:

6.14.2013

1. When I was newly diagnosed, I ‘quit’ my first rheumy in a blaze
of glory. He made me cry and his admin was giving me a hard time about
releasing my records. I had a moment and called her a name I’m too
ashamed to type here.

2. I have permanent erosions on the ball of my left foot. It only bothers me when I stand for a long time in bad shoes.

3. Before I was officially diagnosed, my feet hurt so bad that I
really did wear tennis shoes with a business suit. More than once.

4. I have tried every detox diet for arthritis out there including
the one where it has you chug saltwater to make you…um…use the bathroom.
Which, FYI, doesn’t work. Chugging that saltwater and having NOTHING
happen sucks. Waking up the next day 7 lbs heavier due to water
retention…also sucks.

5. I can give myself shots, get regular bloodwork, and have had
infusions and aspirations. They don’t bother me. But I’m terrified of
tetanus shots, TB tests, and the dentist.

6. I didn’t really tell anyone I had RA for the first two years I
had it. I’m still very protective over who gets to know the details.

7. The majority of my friends have no idea that this blog exists.
Even still, I make a point not to mention specific or identifiable
stories.

8. I’ve only ever let one person see me give myself a shot. It just
feels too personal for some reason. I’d actually be more comfortable
walking around naked.

9. I had weird hormonal things happen in the months before I started
having symptoms. Pre menstrual depression so severe that if I thought
you had looked at me wrong, I’d burst into tears. Even today, if I
start or switch birth control pills, I have strange aches and pains for
the first month or two.

10. The first two places I experienced inflammation were the arch of
my left foot and my left pointer finger. In both cases, I literally
woke up one morning and it felt like I’d been stung by a bee.
And there you go! Do we share any of these? I’d love to hear.